Q regarding cortisol levels - anyone else exper... - Thyroid UK

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Q regarding cortisol levels - anyone else experience very low levels? Could it be Addison's disease? I know it's rare.

LPLx profile image
LPLx
21 Replies

Hi everyone,

I got these results from a recent 24hr cortisol urine test. I'm a little concerned and I mean, it matches how I feel, I feel horrendous. However, i've had this done by a functional medicine practice called DUTCH testing, but i'm concerned my GP/endocrinologist won't accept this as valid. I'm really just hanging in there by a thread at the moment, I feel my body is in such a bad way. Should I be taking urgent action from these results?

Additional: I have natural thyroid hormones on their way to me, also prescribed by an alterative medical doctor as my hormones are low, but don't fit the criteria on the NHS. I'm hoping this will help the cortisol levels too. I am doing an aldosterone test and an adrenaline test, hoping this can shed some more light on this. My results from the test are below:

Cortisol Metabolites and DHEA-S (Urine)

a-Tetrahydrocortisol (a-THF) Below range 18.0 ng/mg 75 - 370

b-Tetrahydrocortisol (b-THF) Below range 559.0 ng/mg 1050 - 2500

b-Tetrahydrocortisone (b-THE) Below range 864.0 ng/mg 1550 - 3800

Metabolized Cortisol (THF+THE) Below range 1441.0 ng/mg 2750 - 6500

DHEA-S Within range 509.0 ng/mg 20 - 750

Results from the NHS have been the following:

Plasma cortisol level (XaEKZ) 369 nmol/L [140 - 690] (9am)

Plasma cortisol level (XaEKZ) 311 nmol/L [140 - 690] (9am)

How do I get them to take this seriously? I've been fobbed off so much in the last 1 year and a half of being sick, not sure how much longer my body can hold out!! Been to A&E 3 times in that time and they've just sent me home as a hypochondriac saying i'm fine and need to gain weight (i'm severely underweight), assuming they didn't check my thyroid (other than TSH) or my cortisol hormones!

Any help would be so greatly appreciated!

L x

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LPLx
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21 Replies

Urine is no good for assessing low cortisol as cortisol only shows in the urine when there is too much of it. Serum cortisol is far better for measuring cortisol, your cortisol results of 369 & 311nmol/Ls are more or less within range. Cortisol first thing in the morning should be between 350-550nmol/Ls. What other symptoms do you have? Are you losing weight, do you have brown markings on your gums? Do you need to sleep a lot. What is your BP? Do you get dizzy, feel faint, have D&V? These are all signs of low cortisol. I'm not convinced that an Endo would do a short synacthen test with these levels, people who may have Addisons/adrenal insufficiency often have much lower cortisol levels. I have secondary adrenal insufficiency, the last time my cortisol was tested it was 11nmol/Ls although that is extreme!

LPLx profile image
LPLx in reply to

I am always faint... I have been eating salt for around 2-3 years to manage this. I have rashes on my body, including skin pigmentation which was on my chest. My whole body is weak and I can't see properly half the time. I often can't breathe either. Going for even a walk makes me extremely tired. I can't even eat a banana without it raising my blood sugars and then getting hypoglycemia in the next 2-3 hours. Extremely underweight (the doctors have told me many times to gain weight). My stomach is in bits but they can't find anything wrong on CT or MRI scans. I am always feeling sick and did have D&V around 3 months ago for about a week and a half, had a calprotectin done and my inflammatory markers were at 900. 4 months in, and i'm still just as unwell but i'm no longer being sick etc. I've learnt to manage this. I stand on my head half the day just to get the blood flowing around my body.

I thought the serum in the blood was just hormone in the blood and not what's actually available to the body (such as free cortisol) and what was actually metabolized, which is shown in the urine? This test was around £200 with a reputable lab in London.

Best,

L x

radd profile image
radd in reply to LPLx

LPLx,

IMO the DUTCH is the most comprehensive, followed by saliva, then 24 hour urine and then serum blood. Blood only gives a snap shot of both free & bound in that one moment and offers no indication of circadian patterns. 24 hour urine is useful for checking kidney function as measures sodium, potassium, urea & other.

radd profile image
radd

LPLx,

The urine DUTCH is an excellent ways of measuring cortisol as can offer far more information than blood serum or even saliva tests. If you had the full test you should also have the results for the metabolites of DHEA, oestrogen, androgen, progesterone, etc.

The good news is your adrenals are working. DHEA is within range & you have adequate cortisol as evidenced by your blood serum. And you’ve had this hugely comprehensive test which when correctly interpreted will help assess which supplements can help with your issues.

The bad news is you will need these results interpreted by an experienced practitioner who understands about utilisation, excretion, the different oestrogens, and how they interact between themselves, other hormones and influence cortisol.

They will consider any MTHFR impairments, ie methylation that might be for instance converting too much or retaining to little. Even cortisol switches between cortisone and other metabolites. This is pretty deep stuff. I know roughly what they are looking for but wouldn’t have a clue how to read these results or what to supplement for what.

Unfortunately you are right in that a GP or endo won’t have a clue either.

LPLx profile image
LPLx in reply to radd

Thanks so much! From my research, this is what I thought too with regards the urine. Do you know which specialist I would need to see? Would a functional medical dr be able to help with this?

I'm so exhausted and i'm really not sure how long my body can handle this. As my mum says, i've been in 'survival mode' for the last 1.5 years.

Thanks again,

L :) xx

radd profile image
radd in reply to LPLx

LPLx,

Yes, some functional endos might know. It would be best to ring and ask their secretary if this is their speciality because it has only become more widely used in the last few years. Otherwise I had a nutritionist with good Hashi & adrenals knowledge perform mine. I didn't even know what the DUTCH was before she organised it.

The supplements needed for addressing issues can be expensive. I used them for about a year which seemed to reset everything & I have been ok since. I had my test about 5 years ago.

LPLx profile image
LPLx in reply to radd

Wow, that's really great to know. I am working with an alternative thyroid doctor in the US, so i'm really hoping they can help with this also, but i'm not too sure! What symptoms did you have, can I ask? Where the blood sugars a problem?

radd profile image
radd in reply to LPLx

LPLx,

Yes, and easily reversed once I optimised thyroid hormones and ate smaller meals several times a day all with protein. I never allowed myself to get hungry as this made me feel shaky and out of sorts (hypoglycaemic). I even had protein snacks in my bag, car, by my bed. It only took about a month to see vast improvements, ie not feeling hungry after eating, being able to eat foods with a higher sugar content, ie satsumas, grapes, chocolate 😁.

LPLx profile image
LPLx in reply to radd

This is great news! I've been doing it for 1.5 years now and it doesn't seem to be shifting anything lol, only keeping it at bay. But I am only just about to go on my thyroid meds, so perhaps this could be a reason too? I am testing aldosterone and adrenals, just to make sure there's nothing else going on too. The weirdest thing when it first started happening, I was on a train and I didn't know where I was or like couldn't see anything... when I look back, i'm like poor me had no clue what was in front of her haha! So glad you managed to fix it :)

Thanks again for your kind messages.

All the best,

L x

radd profile image
radd in reply to LPLx

LPLx,

Crikey 1.5 years is a long time to see no improvement.

Thyroid meds should certainly help but also look into having sex hormones tested if you didn't include them in the DUTCH. (I don't mean have another DUTCH, just ask your GP for a blood test or use a private lab yourself.)

When adrenals are worn out, they may sequester progesterone to help make more cortisol, creating an imbalance in the progesterone/oestrogen relationship. Both low thyroid hormone and prolonged cortisol imbalances decrease the liver’s ability to clear excess oestrogens from the blood. This will impair thyroid hormone conversion & increases TBG levels which bind too much thyroid hormone making it inactive.

LPLx profile image
LPLx in reply to radd

Thanks so much, sorry I missed this! You know, I actually think I have overactive adrenals. I started my thyroid hormones today and started having mania and all the symptoms of high adrenaline. I've had these episodes since a child, but i've managed to control them in recent years through diet until these blood sugar problems started. I wonder, could it be possible that i've had overactive adrenals and then my cortisol 'burnt out' as a result of it?

Thought of the day, ha!

Thanks again,

L :)

Eton profile image
Eton in reply to radd

Radd ,Can I ask what a typical day's diet would look like for you. I have low cortisol problems . If changing my diet would help I would be more than willing to try.

I often feel weak when out walking and this is happening much more frequently of late.

Thank you

LPLx profile image
LPLx in reply to Eton

Eton , from my experience of managing the blood sugars for 1.5 years, anything that doesn't raise the blood sugars quickly is best: - brown rice, for example and other low GI foods (foods that're good for diabetics).

- Add protein to every meal and good fats to every meal because they slow the digestion process and raising blood sugars.

- foods high in fiber will slow the blood sugar raise, but then be careful because they can also make the blood sugars too low.

- eat much slower and it won't raise them as quickly (if they get raised, you'll end up on a cycle because the body will take up glucose much quicker the next time you eat because it's struggling).

From my experience, it's getting that rollercoaster under control. Also, see a naturopathic clinic who can prescribe the medication to help raise the cortisol for you.

I hope this helps!

L :)

Eton profile image
Eton in reply to LPLx

Many thanks for your very helpful advice. I will make some changes based on what you have said. Best wishes

LPLx profile image
LPLx in reply to Eton

No problem! I hope it helps. Controlling blood sugars are a nightmare!

L x

radd profile image
radd in reply to Eton

Eton,

My typical days diet now is very normal. I’m not even gluten free because all gut issues & intolerance have gone. The only time I struggle is with high cardiovascular exercise when I can end up feeling drunk if I am not careful. My suspicion is still some insulin resistance when the body is under stress & stopping T3 from entering the cells, so continue to use protein for support of any high intensity exercise.

As cortisol helps control the way our bodies use fats, proteins & carbs my ‘resetting sugar in-balances’ diet was just as LPLx explains above & I carried it through for about a year. I cut all processed sugars out. I love oils but am not a big meat eater so used fresh fish, pea protein powders, eggs, cheese, nuts, etc balancing all natural sugars. I also never allowed myself to get really hungry & still don’t.

I also supplemented a load of sups known to help such as: Alpha Lipoic Acid (ALA) which is a antioxidant helping the body use glucose & lowering high blood sugar levels. Milk Thistle (another antioxidant) is being proven to helps with sugar level control and helps with liver clearance slowed by low thyroid hormone.

Adrenal fatigue (or HPA dysfunction or whatever it is called now 🙄) & blood glucose issues go together; hypoglycemia - too little sugar in the blood, and/or insulin resistance- too much sugar in the blood as unable to enter cells. Adrenal glands are suppose to help balance by secreting cortisol when blood sugars drop, signalling to the liver to convert more glycogen into glucose but many of us with low cortisol levels struggle with this.

Repeated cortisol release can suppress pituitary function because it is working on a negative feedback loop, and leptin resistance that tells the brain when we are full or still hungry (hence feeling hungry after eating but this can happen with insulin resistance too).

Low thyroid hormone slows both the uptake of glucose by the cells & decreases glucose absorption in the gut. Also slows insulin response to elevated blood sugar & insulin clearance from the blood. Low vitamin D levels have been associated with both insulin & leptin resistance and is an important anti-inflammatory. There are many others.

Diet play a massive part of getting adrenals functioning properly again along with optimal & effective thyroid hormones , iron & nutrients and a healthy life style.

Eton profile image
Eton in reply to radd

Many thanks Radd. You have such a lot of knowledge!

LPLx profile image
LPLx in reply to radd

You do really do!! What an amazing brain to have :)

in reply to radd

"Unfortunately you are right in that a GP or endo won’t have a clue either." Can I ask what you are judging this on? Do you have knowledge of all the Endo's in the country or is this based on your experience of one or two Endo's? Fortunately there are some excellent, knowledgeable Endo's who care for those of us with pituitary/adrenals issues.

LPLx profile image
LPLx in reply to

This is also good to know! I just need help lol... it doesn't matter who. I just need support with all these horrific symptoms I am experiencing, which no one can seem to get to the bottom of! :( Do you know of any good endo who could help me out? :)

radd profile image
radd in reply to

PaulineS,

Because unfortunately the DUTCH isn't available on the National Health. Glad to hear you are being well looked after.

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